Wednesday, August 18, 2010

August 18: Day +47

Mommy enjoying those peepers! Even if they're half open...

Hello, and thank you for coming. Let's get right into it. Overall, Bella is still having trouble with her blood pressure, and Renal and ICU are fighting over whether she is too wet or too dry inside now that her crib's scale has completely gone bezerk and we really don't know how much she weighs. Today's been a little rough for Angelique and me. Two reasons:

1) We are still picking ourselves up and dusting ourselves off from being blindsided by this LVOT obstruction business. At this stage of BMT, we thought we were done throwing any new organs into the mix. Having a developing heart issue was just not in the cards, and yet, what do we really know about what should or shouldn't be in the cards? It's BMT, after all.

2) The waiting. It's like when we were told we were looking at V.O.D. but couldn't give her the one treatment to stop it for over a week. I know that that saga ended in our favor, praise God, but hours feel like days around here and days feel like weeks when you are waiting. What are we waiting for? Tomorrow's cardiac MRI. We're also getting a Chest CT scan of her lungs while we're down in imaging to get the best possible picture of what is currently plaguing Bella. We won't have the results from the test till next week most likely, and everyone agrees that we can't move in any direction till we see that MRI. So we wait.

Here's the worst flippin' part of it all. We have to discuss what 'might be happening' somewhat to prepare ourselves, even though we won't know for sure for a while. These are the conversations that wear parents out. They are the hypothetical scenarios that keep all parents up at night for any reason. What if this? What if that? That stuff can drive you NUTS! The conversation that was had in rounds this morning by Dr. Steiner and Dr. Tolar was that kind of conversation. Dr. Tolar implored me not to jump to conclusions about this LVOT thing till we see the images, and it isn't so much that the options are scary (which they are), it's that we're talking about something this big at this stage of the game at all.


On a slightly different note, I have to make a comment about the myopia of western medicine before it escapes me. I've been trying to figure out just how to articulate this following point for a while and I think I've got it. Here goes...

On many occasions, a health care professional will ask, "Her skin looks GREAT!... what do YOU think of her skin?" to which I reply cooly, "Yep, her skin looks good. Now if we can just get her organs to work again, we'll be really stylin'." Then they look down feeling dejected or awkward.

It's not that I'm not excited about what's happening with Bella's skin. I am. It's just that Bella is more than her skin. I haven't heard the sound of my daughter's voice in 45 days, and for the week prior, what I heard was mainly wailing and crying. Her first word? While trying to pull away from mommy and daddy when we needed to suction her mouth, she cried, "NOOOOOOOOOO!!!!" Her second word? When we were done. She cried, "OWWWW...."

No joke.

Now, she lies hidden under machines, tubes, wires, and blankets, and when you so much as remove her blanket and expose her chest to air for a second, she starts to writhe and wiggle in anxiety.

I pray that this too shall pass, but Bella "the Whole" is still missing, regardless of what's happening to her skin. So, medical world, when I seem a little less than excited about the one part of her treatment that is going well, please take it in context; it is good news, but the bad news currently outweighs the good news.

What IS currently plaguing Bella? Two main things:

1) Her blood pressure. She cannot produce enough "umph" out of her left ventricle for her blood pressure to be at a safe level, so she is on medication to help "squeeze' her abdomen to artificially inflate that pressure. Problem is that the medicine reduces blood flow in the intestines, so the longer the problem with pressure persists, the greater the chance of necrosis (dying of tissue) from poor blood flow in the belly.

2) Her lungs. Bella can't seem to produce the right balance of gases in her blood stream without a lot of support from the ventilator.

Bella most likely did contract some sort of infection over this past weekend as well, but it seems at present that Ali's cells are behaving appropriately and fighting it off! That is good news, but what role the infection is playing is unknown because they don't fully understand what kind of infection she got. All we know is her counts shot up and down wildly over a couple of day period, signaling that they were mobilizing to hunt something down.
So, I feel beat up, and beat down, and just plain BEAT... but not beaten. There is some serious emotional fatigue going on. More so than physical fatigue. It's getting our emotional engines rallying up and firing against the weight of the current challenge... when we thought we were SO CLOSE to extubation one week ago today... it's like we just landed on the really big ladder in the game Chutes and Ladders... remember the old commercial? It went something like, "Oh Jimmy! You're going down, Down, DOWN!" LOL. Feels a little like that.


Tomorrow is a(nother) big day. Please pray this trip to imaging doesn't hurt Bella any. Please pray that they get really conclusive images during both tests. Please pray Bella goes back on Prisma safely and uneventfully tomorrow when she returns. Please pray for strength for me. Please pray for focus for Angelique. We ask for all of these things humbly and with gratitude.

Good night.

Fabulous socks of the day...


  1. You ARE the most SuperFamily.
    I hope the earlier posting means you go to bed earlier now!
    That first picture is beyond the love I see there.

    Ive rallied some serious warriors to the team....we are all praying back at home.

  2. Praying hard for Bella, you, Angelique and Ali. I pray that this is just one more bump on her road to full and complete recovery. Be uplifted by all those surrounding you physically and in prayer.

  3. Lots of prayers are on the way. God is Great and He works miracles every day. I'm so sad that Bella has to go thru this. But I have faith that she will make a full recovery. She is strong and has Ali's super cells! Lots of love.

    Take Care,
    Amber McLaughlin,CA

  4. I am praying for you all. I'm so sorry you all are having to go through so much. I so want to see Bella awake. You as her parents I can not image how hard it is. You are living on Hospital time and nothing runs on time and time goes so slow. My daughter had minor surgery today and I was a freak with anxiety till I could see her again. Will be praying for you all. God Bless you all and please heal Bella. Brend U MN

  5. I'm so sorry Bella, I would do anything to get you back to your smiling self...I am confident that during this time, God is watching over you, holding you tightly and has his loving protection over you. Tim & Ang, if there is one thing I can relate to, it's the hypothetical scenarios. I always find myself racking my brain with all the, 'What if's?' ....after so much racking of the brain, and when the answer/results do come about, I always look back and ask myself, "WHY did I worry so much?' Whatever you can't meet or bear, leave it @ the feet of Jesus...for he will see your heart and comfort you more than you can imagine. Prayers are being sent to the Heavens in multitudes....they will not go unanswered....I have faith that Bella will be healed and will look back and say, 'Yeah, when I was born, I had this rare condition, but when they brought me home from the hospital, it went away.'

    Praying with all my heart, mind and soul.

  6. I struggled to say something uplifting, something healing...and I find that mere words are not enough. As a parent, my heart just aches for you and Ang, and for Bella. In spite of that, I am hopeful that now the mystery of her low blood pressure is discovered, and treatable. I pray that Bells's test goes smoothly, without incident, and that the pictures are clear. I pray that she is not upset by Prisma. I pray that the darn scale is made to work...but mostly, I pray with a heart that is broken for you all, but still so full of hope, love and faith that Bella, beautiful baby girl, will be well...blessings to you all.

  7. I´ve been abroad the last weeks but always with you on my thoughts and prayers.

    Thank you for keep sharing with us your most intimate fears.
    Thanks you for encouraging us to do more.
    Thank you for inspiring us with Bella´s journey.
    Thank you for, even in the less positive days, sending us a message of hope and strength.
    Thank you for making me love my daughters even more.

    I cannot retribute everything you have been given us. All I can do is keep praying for you. And I will. Everyday.

    Be sure that all this will pass!

    Carla, from Portugal

  8. Praying that today is a good day for Bella and that this bump in the road is soon a distant memory for all.

  9. I really don't know what to say. You have to know that you have so many people who care about your family so much. We feel for you every step of the way.
    Please hang in there and remember your EB family is out here praying so hard for beautiful Bella. God Bless!!! Love Leah's Nana

  10. Checking on Bella and Daylon is the very frist thing I do every morning. I continue to pray for the relief and healing of their precious little bodies and the support and love and comfort and provision of y'all as you go through this unimaginable experience.
    A momma in TX.

  11. "But those who wait on the Lord
    Shall renew their strength;
    They shall mount up with wings like eagles,
    They shall run and not be weary,
    They shall walk and not faint." Isaiah 41:31-35

    Praying this for your family today.

    A friend in NC

  12. SuperDaddy is the Little Engine That Could transforming, "I think I can, I think I can, to "I know I can, I know I can...with God's help." You and Ang (SuperMommy) will have the strength and wisdom to continue to do what needs to be done to pull beautiful, strong and lovable Bella over this next mountain. Love, Mom

  13. My heart hurts with you, and as your emotions go up and down, so do mine. We all feel so connected to you, and I hope you feel all the love coming from the other side!

  14. I am sorry to hear about the latest news and how you are fairing emotionally. We are mindfully sending positive energy for Bella and all her tests/scans she will endure tomorrow. We are praying for strength for you and Ang... well continued strength, renewed strength, as you are the strongest parents ever! We love you so much and anxiously await the post tomorrow with news that Bella did fabulously on all her tests! Staying positive and praying like crazy!!!
    Love always,
    The Vanderbooms

  15. I am so sorry that things are progressing so slowly.
    Here is a quote for today.

    "Hard things take time to do. Impossible things take a little longer."

  16. I hope that the imaging tomorrow gives them a better idea of what is going on, so they can start Bella on the road to extubation safely and smoothly!

  17. Hang in THERE - Super Mommy & Daddy - and yes I do think you are both all that!!! I can hear the worn out, tired of all this crap - in your voice...we never know why we have to endure we only get that we DO ENDURE - You can do this.. and Bella will come out swinging just like her parents... Hang in there!!! Know that we are keeping up with you all and praying for your constant healing and sanity!!! You are thought of every day and loved
    Marybeth & Sam

  18. Lynne, Bob, Jack and BenAugust 19, 2010 at 11:12 AM

    I cannot begin to fathom your experience, but please know that when you hit one of these "chutes," we are all there to lift you and hold you up. We pray for strength, focus and peace for you. We pray that you can all feel the love of this community and its support for you. We pray for the Whole Bella and for her healing. Love you.

  19. Our Thoughts and prayers are with all of you. Keep the faith and stay close to God. He is always by your side and he works miracles. He is there to comfort you in your time of trials, tribulations and need. The picture of Mommy enjoying Bella with those peepers is so precious and you can see the love of a mother for her child. God knows what a loving, caring, devoted and faithful family you are. The Love of a family is life's greatest blessing. Bella, God is watching over you, holding you tightly with his loving arms around you to protect, comfort and give you strength to fight all the obstacles you have faced and are facing @ this time.We pray with broken hearts for all of you, and are so full of hope,love and concern that Bella "Your Little Angel" will be well and a miracle will happen. We Love You All. We pray that you will have strength, love and be comforted during this difficult and stressful time. Trust In God. God Bless All of You and Bella.
    Love Always

  20. Praying ever so fervently and diligently . . . God is near to the broken-hearted, to the crushed in spirit. But He will not leave you there. He is the God of miracles . . . may you be filled ever so abundantly with God's strength and peace. We plead the blood of Jesus' on Bella's body, organs, blood, oxygen levels--all areas of need. Pray for God's wisdom and discernment to be in and upon the doctors, nurses, and specialists. Pray for God's precious hand to be over the delicate balance of machines, and bodily systems, and emotions--in Jesus' name. We pray all involved and affected would feel God's comfort and ever present help in this time of need. Fill up Angelique and Tim, and strengthen and heal Bella, in Jesus' name.
    Tiffany (and family)

  21. Praying exactly as you asked!

  22. Sending lots of virtual hugs and lots of prayers. We pray for strong heart and lung function, continued cell growth, and healing.
    All our love,
    The Gleason's

  23. What a beautiful picture of my wonderful daughter Angelique and Bella. It brought tears to my eyes.

    I love you,

  24. I have empathy for your emotional fatigue. I want to remind you that you have what it takes within you and you can and will pull through this as a family. I know you are tired, rightfully so. You are special people with exceptional abilities and I believe in your ability to cope and manage the stress with faith and positivity. I am not minimizing the huge weight of this matter, just reminding you how huge you are within. Praying just as you asked, sending love and strength. Angela Ostermann

  25. Sending prayers for solid tests. Calm and peace for Bella as she marches on toward recovery. Warmest hugs for both of you as you continue to support your darling daughter through uncharted waters.
    Much Love,